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Posted 10/15/2011 4:00 AM (GMT 0)
I spent the past two days at Mayo. Yesterday (Thurs. 10/13), I had blood work and urine, got a tetanus shot, and had a chest CT w/o contrast. Today, I had an MRI of the abdomen with Gadolinium. This took some time to set up, as my Interventional Radiologist, who usually gets an IV started in my upper arm with imaging, was out of town today. Lynn from the PIC team was also out. Since this was so vital to get done today, I let an ARNP try it. She couldn't get it. So then she called in a P.A. that works with the IR. It took awhile, but he finally got it and w/o too much pain. But it took an hour to finally get the IV access, after I'd gotten undressed and into a gown and pants. Then the MRI took nearly an hour. I was so tired, I fell asleep twice while in the MRI tube.

After the MRI, I had an appt. with my Transplant Coordinator--except she was off today. What is it with taking Fridays off? I was seen by another TC. She didn't say much, except that there were some issues with my chest CT that the Transplant Doc will discuss with me. So I immediately started to think that the cancer had spread to my lungs.

I waited one-half hour PAST my appt. time to see the TP doc. I was afraid I was going to miss the van, as I'd told them I would be done at 5. He finally came in, listened to my chest and it was basically clear (which it wasn't when I first got up this morning or tonight.) However, the chest CT was stable. It showed old damage from smoking (I'll be nicotine free 9 yrs. in Dec.) So the TP doc wants me to see a pulmonologist. However, he went ahead and reactivated me while I was there with him. (He called someone and told them to reactivate me.) He said that the liver tumor was still decreased in size since the treatment in July. He couldn't get the actual size of the tumor, as that info was not yet available, due to how late I got the MRI. He said everything is stable.

So I'm beginning to think I may get a transplant call before the month is out. I kind of hope not, as I still have things I need to do. And my Primary Caregiver is going to be gone the first week in Nov.
Posted 10/15/2011 5:06 AM (GMT 0)
Connie-great news that you have been reactivated! And that there is no cancer in your lungs. Rest up, because I am sure that with all the prayers being said for you from all of us here...that you will get the call very soon! Do you have a back up plan for the first week of November when your primary caretaker isn't available?

Big hugs for you,
Emma
Posted 10/15/2011 7:00 AM (GMT 0)
Great news Connie.
Posted 10/15/2011 3:51 PM (GMT 0)
yeah yeah yeah Doing the happy dance again........
Posted 10/15/2011 5:35 PM (GMT 0)
Connie,

  Great news.  I would guess the other things you need to do will wait, if a liver happens to be available.   tongue    We are thinking of you.

Angie1953

Posted 10/15/2011 6:01 PM (GMT 0)

Angie, they would have to wait.  I really need new eyeglasses, though.

Hugs,

Connie

Posted 10/16/2011 2:02 PM (GMT 0)
Great news Connie

Charlie
Posted 10/17/2011 12:18 AM (GMT 0)
YAY!!!!!
Posted 10/17/2011 4:41 PM (GMT 0)
Connie,

I'm so happy that your chest is cleared up. You are in my thoughts and prayers. Best wishes to you for a great transplant! yeah

Liverette

 

Posted 10/17/2011 6:34 PM (GMT 0)
Super news!!!
Posted 10/18/2011 6:38 PM (GMT 0)
I called Mayo to find out when my Pulmonology appt. will be. It's Dec. 15th. I'm pretty sure I will have been transplanted by then. I also requested that my TP Coordinator call me with the size of the tumor now, and requested that I get copies of the lab work, CT scan, and MRI done last week.

While I suspected that my current TPC might change post-transplant, I asked about it and was told that the post TP coordinator would be different. No real surprise, but it's a shame, really, as the one I have now is very bright and we get along well. Something I forgot to ask about, but will when the TPC calls, is whether I got an extra 3 points since it's now been 3 mos. on the list.

I've been checking OPTN (Organ Procurement and Transplant Network) online for MELD status and how many people are on the waiting list according to their MELD scores. I am currently a 22, so that makes me 1 of 6 women in the 19-24 range. However, if I got 3 extra points yesterday, then I am 1 of 4 in the 25+ range. The data available is from 10/17.

Hugs,
Connie
Posted 10/18/2011 7:11 PM (GMT 0)
connie!!!!!!!!!!!! such good news that you are re listed,,, praying for a smooth transplant and super quick recovery,,,,
lots and lots of thoughts and prayers,,
xxnatasha.xx
Posted 10/18/2011 8:03 PM (GMT 0)

Thanks, Natasha!  :-)

Hugs,

Connie

Posted 10/18/2011 9:10 PM (GMT 0)
Yes, Connie. Keeping you in my prayers every day. Any moment now...

Emma
Posted 10/18/2011 11:20 PM (GMT 0)
Connie,

  Hope you hear something soon...the CALL.  Best to you.
Angie1953

 

Posted 10/19/2011 12:51 AM (GMT 0)

Actually, I'm hoping it won't be until after Nov. 8th, since my caregiver will be out of state the first week in Nov.  If it's this month, she could stay with me in the hosp., but not at home.

Hugs,

Connie

Posted 10/19/2011 1:20 AM (GMT 0)
Ok Connie,,,,,, Hope you get your call on Nov 9 and have time to get your new glasses.  scool

Angie1953

Posted 10/19/2011 3:09 AM (GMT 0)
I have my sister in SC on alert to possibly have to come down here if my primary caregiver isn't available. It's difficult for my sister to take time off, as she has her own shop and she makes the bulk of the merchandise (costumes for recitals and historically correct clothing for medieval recreations, custom beading on wedding gowns, and also handmade jewelry.)

Hugs,
Connie
Posted 10/19/2011 10:40 AM (GMT 0)
Wise decision Connie

I feel quiteconfident that yourecovery will be smooth as you are not entering the phase as I'll as some who are decompensated.

Prayers for the call soon!

Carol
Posted 10/19/2011 11:58 PM (GMT 0)
I received a letter from Mayo today officially stating that I have been reactivated with a MELD of 22.  So I guess I didn't get another 3 points.  I was out all day, but will call my TPC tomorrow and ask about that, as well as several other questions I have.

Hugs,

Connie

Posted 10/20/2011 8:11 AM (GMT 0)
Hello Connie,
I want to acknowledge you on this forum for your kind thoughts and concerns during my recent yet another illness. One word would describe you "magnificent ". Special mention to Carol ,Rick and David and I hope I haven't forgotten anybody else. I'm feeling reasonable now ,with still a long way to go.
Lets hope your transplant goes perfect for you.
Cheers and best wishes
Michael
Posted 10/20/2011 6:05 PM (GMT 0)
Thanks very much, Michael and Deb. That means a lot to me. Michael, I'm so glad that you are home and doing better. Let's hope there will be no more emergencies and that you will get your transplant even sooner than mine!

I'm not afraid of the surgery, but am a little concerned about issues post-transplant. I know the body can go a bit crazy and some things (like post-TP diabetes) can't be overcome. So more than anything, I'm hoping I won't have those kinds of problems. The best thing I have going for me, as Carol mentioned, is that my liver hasn't decompensated as most TP candidates' livers have. It's the liver cancer that is the driving force for my transplant.

My TPC called yesterday while I was out, so I put in another call to her and will post on what she said when I get a call back from her.

ADDENDUM: My TPC called and answered my questions. Three points will be added to my MELD score on Fri., the 22nd, putting me at 25 and part of the group that is at the top of the list.

She said that sometimes after tumor treatment, with my type of tumor which is "hanging off the side" of my liver, it is difficult to size it. However, it did shrink below the 4.9 cm it was prior to treatment and my AFP is now only 13.9, compared to the 39 that it was prior to treatment.

I'm also having to change my Part D Medicare Prescription Drug Plan, as the one I currently have is raising its monthly premium to more than Extra Help will cover. I was told that the annual deductible of $320 (which I've never had before) will be covered by Extra Help.

Hugs,

Connie
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